Life: A Work in Progress

Just for the heck of it, I made a Venn diagram of my life at present.


I think this is pretty much self-explanatory. Needs a little tweaking. My life, that is, not the diagram. I’m working on it.

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Fortune Teller Claims Psychic Powers Superior to Mammography

Not everyone has been pleased with the latest mammography screening recommendations, recently published by the American Cancer Society in the Journal of the American Medical Association. Proposed for women at average risk for breast cancer, they differ in certain details from the guidelines released in 2009 by the USPSTF. These differences have caused no end of heated discussion. Furthermore, the USPSTF is in the process of updating their 2009 guidelines. A draft of their revised guidelines was open to public comment through May of this year, and is now being finalized. A member of the USPSTF explained the rationale for this update in the Washington Post. Meanwhile, the ACS is planning to publish separate screening guidelines for high and intermediate risk women in 2016. Is it any wonder that women are more confused than ever about how and when to get screened for breast cancer?

Enter Madame Astra Zen-Acre. Recently, she and several other fortune tellers, psychics, witches, and assorted healers formed an organization dedicated to resolving this confusion once and for all. Their organization, called Infallible Diagnostic Knowingness, or IDK, was founded to make their services available at no charge to anyone who wants to avail themselves of a reliable, radiation-free screening method that can predict breast cancer years before anything shows up on a standard screening tool.

“Guidelines, schmidelines,” said Madame Astra in a recent interview. “We members of IDK can pick up cancerous emanations long before those foolish, low-tech machines. And we’ve been doing this for centuries.”

As for Breast Cancer Awareness Month, or BCAM, Astra Zen-Acre is dismissive. “Awareness, my left foot,” she said. “We live and breathe true awareness, not some jumped-up marketing opportunity. Plus, they stole our acronym. We’ve had an initiative called BCAM for decades now. It stands for Be Cautious About Mammograms. As soon as they started pushing those damned, primitive machines in 1969, we knew they were trouble.”

Regarding the color pink, Madame Astra declared, “The only thing pink should be associated with is the heart chakra, which stands for love and healing. A pink mixer isn’t going to cure a blasted thing. We don’t even use them for our potions. Nothing beats a good, old-fashioned cauldron.”

When asked how women who are interested in a screening session could contact a member of IDK, Madame Astra laughed. “Oh, Honey,” she said, “we’ll contact you!”

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Breast Cancer Awareness: A Casual Conversation About Mammograms

In fact, this sticker is inaccurate. I got my 3D tomosynthesis-assisted mammogram a week ago. As I am wont to do, I wore my employee ID badge, identifying me as a clinician, to the appointment. Perhaps for that reason, or perhaps because of my breast cancer history, or perhaps because the mammographer called in one of her colleagues to check that she got all the images she needed to, I got to watch the computer monitor as they scrolled through the digital images that had just been taken of my breast-and-a-half. None of us saw anything alarming, but what do we know? Well, as it happens, we know a lot, but the radiologist has the last word. I was pleased that the misshapen lump that is what’s left of my right breast was utterly without density. And the left breast appeared to have only “scattered areas of fibroglandular density.”[1] This is a change from a few previous mammograms, which had shown that my breast-and-a-half was getting denser. Okay, I’m not a radiologist, but I was glad to see that my breast tissue seems to be trending toward less density, after trending toward more. Who knows why, but I do take vitamin D3, which has been associated with decreasing breast cancer risk, possibly by a mechanism which reverses breast tissue density.[2] So perhaps after taking a lot of it these past few years, it’s doing something.

Anyway, bottom line is the thing was negative, according to the damned report I finally got a week later, after hectoring my poor primary care doc, then driving to my local hospital and getting a copy of it, plus a disk with the images, from the nice diagnostic imaging clerk. The nice clerk, after reading my ID badge, which identified me as a clinician, and looking at the computer, which identified me as a person with a breast cancer history, initiated an interesting conversation. I will paraphrase it as follows:

She: You know, these 3D things are pretty good, but why don’t we have a better method for detecting breast cancer than mammograms?
Me: I know! Mammography is so last century.
She: And what about all that radiation? I mean, this woman comes in who’s 70, who’s had all these mammograms, and the current mammogram is negative, and she says, “But I can feel a lump,” and then she gets an ultrasound that finds out she has breast cancer. Come on! After all those mammograms that didn’t find anything? What’s up with that? And you have to wonder if all that radiation caused the damn breast cancer after all those years.

(The jury is still out on this subject, by the way, but here’s a quote from the National Cancer Institute[3]: “Radiation-induced mutations can cause breast cancer, especially if exposure occurs before age 30 years and is at high doses, such as from mantle radiation therapy for Hodgkin’s disease. The breast dose associated with a typical two-view mammogram is approximately 4 mSv and extremely unlikely to cause cancer. One Sv is equivalent to 200 mammograms. Latency is at least 8 years, and the increased risk is lifelong.” But to continue…)

Me: No kidding, huh? Way too many lesions are missed by mammograms, no matter how fancy they are.
She: I think everyone should at least get a breast MRI, say, every five years, no matter what. But then, that would be MORE radiation. It’s nuts.
Me: I know, I know! There are some blood tests being developed, but who knows how long it will be before they are reliable and available.
She: It’s crazy. And that 70-year-old woman? They were ready to send her home after that last mammogram, and she had to insist that she get some follow-up. I had to call the ultrasound person and get them to see her right then. And they said that the cancer had probably been developing for years. Years!
Me: And then we have Pinktober, which is all about corporations selling pink crap and making money, and here we are in 2015, still stuck with outdated detection technology. Not to mention that up to 30% of women who’ve had breast cancer will develop metastatic, stage IV breast cancer. Is 30% of the research on breast cancer going to stage IV? No! And men don’t even know to get screened, and by the time they do, well…
She: I know! We had a man come in, whose sister had breast cancer, and it never occurred to him that he might be at risk, too. And then he found a lump…I told him, if your sister has breast cancer, and you’re her brother, then, you’ve got to get checked.
Me: Yeah, not to mention BRCA genetic mutations. They’re carried by men and women.
She: And why don’t doctors who have patients who smoke cigarettes make sure they get a regular chest X-ray? We have all these women getting mammograms, that don’t work sometimes, and here’s these people who are at risk for lung cancer, and they never get a chest X-ray! Totally crazy.
Me: Yes, it is.
She: Well, here’s your report and your disk. Do you need anything else?
Me: No, I’m all set. Thanks very much.
She: You’re welcome. Nice talking with someone who has a clue, you know? I don’t get to have this kind of conversation very often.

1. ACR BI-RADS® ATLAS — MAMMOGRAPHY. Report with images on interpreting breast density.
2. Cancer Causes Control. 2012 January; 23(1): 1–13. doi:10.1007/s10552-011-9851-3. Vitamin D and mammographic breast density: a systematic review.
3. National Cancer Institute, physician PDQ on breast cancer screening. Scroll to section on ‘Harms’ of mammography.

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Breast Cancer Awareness? Let’s Get Real

It’s only September, and already I’m sick of Pinktober. Already, there’s been ‘sexy’ pink fundraising idiocy, stupid Facebook ‘awareness’ games, and nine pages of newly execrable pink wearables and ceramic tchotchkes on the Bradford Exchange site. Who buys this crap?

There was a #PinkOFF hashtag circulating on Twitter in the past few years. I say, let’s revive it. Because I’m already pinked off.

In an attempt to introduce a note of reality into the whole awareness thing, I’m going to describe some real-life folks with breast cancer. We are not the “A list” people. You know, the people who take up skydiving after treatment, and go on book tours to advertise the inspirational tomes they’ve written about how skydiving gave them back their lives after breast cancer. Frankly, the rest of us are way too exhausted for any of that, nor can we afford the skydiving lessons or the cross-continental plane fares. We don’t feel like warriors or heroes, and we’re ‘survivors’ only in the sense that, so far, we’re still breathing. We don’t walk around decked out in pink ribbon jewelry or pink sweat suits so that we’re easily identifiable. Some of us blog, when we have the energy. But, in the land of happy, pretty-in-pink breast cancer awareness, we’re not represented. We’re the silent majority, as it were. We’re on the “other” list. And trust me — it’s a much longer list.

What we represent is the reality of breast cancer. So, without further ado, here’s a short list of some of us:

  • Seven years after diagnosis and treatment, I’m still tired. Still broke because I haven’t been able to work full-time since. Still have fibrotic scar tissue from surgery and radiation. Still have pain, muscle spasms, restricted motion. Still foggy. Still constantly juggling to pay the bills. But I consider myself fortunate. At least I can work. And so far, I’m still NED — pending my next mammogram in a few weeks.
  • There’s a young woman I’ve known for several years now who, after discovering she was BRCA positive, had a preventative bilateral mastectomy and reconstruction. Swear to god, she developed every post-op complication known to womankind — flap failure, tissue necrosis, blood clots, adhesive capsulitis, infections, you name it. The end results, after several hospitalizations and surgeries, are still uneven and imperfect. She’s still tired. She’s still on a blood thinner. She’s still in pain. But she’s a mom and a wife, and her family are just glad she’s still alive.
  • Then there’s the woman who is an artist, who developed severe peripheral neuropathy in her hands after chemotherapy. Actually, I know a number of folks who fit this description. One of them had to give up making art entirely. One of them, after years of unrelieved pain despite trying an array of meds, finally found something that helps, and manages to work as an artist, although it’s still a struggle. One of them had to stop drawing, because it hurt too much, and took up photography, which hurt less, although she’s too tired to do enough work to make a living, so she scrapes by on disability.
  • Speaking of giving up doing the things you love, there’s my friend who recently had to give up a long, successful, much-loved professional career because of the pain, exhaustion, and complications caused by stage IV breast cancer. It’s hard to have a life when you seem to spend half of it in the hospital and the other half recovering from being in the hospital.
  • Then there’s another artist friend who has stage IV breast cancer. Before she had breast cancer, she was an accomplished, imaginative photographer, had gallery shows, the whole nine yards. Not now. Now, when she’s not having more surgery or radiation or chemotherapy, she still occasionally manages to take some fabulous photos, if she has the time or energy after helping to look after an aging parent, as well as her very young grandchildren.
  • Then there’s the woman who was treated for Hodgkin’s lymphoma in her early twenties. Years after treatment, she developed life-threatening coronary artery blockage due to the extensive radiation she received. She survived two stent placements by angioplasty, only to end up later being diagnosed with breast cancer. Oy. You don’t get a treatment discount for developing a second kind of cancer.
  • Then there’s my friend with stage IV breast cancer who was recently diagnosed with a different, and rare, kind of cancer. If her kidneys are cooperating, she may be getting her first chemo infusion for that second cancer as I type this. Fingers crossed.

I could go on. There’s my friend with metastatic breast cancer whose husband has recurring melanoma. There’s my friend who finished treatment for breast cancer, whose mother was then diagnosed with metastatic breast cancer. There’s my friend whose husband was such a shit while she was being treated for breast cancer, she had to get a divorce. There’s my friend who had breast cancer who later developed Chronic Myeloid Leukemia. None of us are likely to appear on the Today Show or be asked to tell our stories at a Komen fundraiser. But if anyone would like to raise some genuine breast cancer awareness next month, maybe we should. I’m not holding my breath though. And I won’t be wearing pink.

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